Welcome to the San Diego Chapter!
Thank you for visiting the San Diego Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
On Saturday, September 18, the Bay Area, San Diego, Los Angeles, and Sacramento chapters came together from across the state for one, amazing day of walking & rolling to Cure FSHD! Walkers and rollers stepped out to say "FSHD Ends with Me!" and our local event raised more than $90,000 towards the campaign total, through participants and teams from across the state.
Stay tuned as we begin the planning for our 2022 Walk & Roll to Cure FSHD!
Volunteer Spotlight: Amy Bekier
Hear from your local Chapter Director (and National Board Member!), Amy Bekier, about her journey with FSHD, how she got involved with the FSHD Society, and what she gets out of her work.
Volunteer Spotlight: Dana Simone-Kurtz
Next, meet your local Walk & Roll Coordinator, Dana Simone-Kurtz! She describes her relationship to the disease, her motivation, and advice for the newly diagnosed.